Hello everyone.....Thanks for the info. I had autoimmune encephalitis just over a year ago.
This sounds very similar to Mollarett's Encephalitis and prior to that I had a number of very serious hospitalizations, all with different causes - 8 in 9 mos., and also came away with a number of stents and had 2 separate spinal taps (much, much easier today than they used to be...at least if you don't have bad knees like I do). If this is the only way they can make a diagnosis, then I simply have to undertake it.
During this time I also developed epilepsy. Fortunately I was in the ER and there were doctors present when seizures occurred. I have two different types and will be on meds for the rest of my life. Epilepsy becomes more common with age. I've had no more attacks, but broke a wrist during one of the early ones.
I have been told about white lesions on MRI scans, but it has been a long time since I brought it up with my neurologist. I have a great relationship with mine....and I generally have MRI's every 18 mos. or so. I, too, have been told that the white lesions are nothing to worry about, haven't changed in many years and so I just live with them. It would be nice to know the reason why, but then what am I going to do with the info.?
The day will come when we know. As we get older, the brain shrinks. The very worst memory problems I've had have been as a direct result of the autoimmune encephalitis. No, they don't know much about that at this time, either. There are a few reasons, but none scientifically proven. It did, however, affect my memory and a psychiatrist is used here in the U.S. to determine exactly which part of the brain is most affected. I was lucky in that I didn't have a major problem, but I know myself that my memory isn't nearly as sharp as it used to be. To me, that's the most worrisome outcome of all of this.
There have been so many unknowns over the years (I'm in my mid-70's) that one actually learns to live with them, trust in your doctor(s) and just get along with life as well as we can. I have nothing to add to anyone else's experience.....reasons take time and plenty of research. In the meantime, we wait. Yours, Lenora.
This sounds very similar to Mollarett's Encephalitis and prior to that I had a number of very serious hospitalizations, all with different causes - 8 in 9 mos., and also came away with a number of stents and had 2 separate spinal taps (much, much easier today than they used to be...at least if you don't have bad knees like I do). If this is the only way they can make a diagnosis, then I simply have to undertake it.
During this time I also developed epilepsy. Fortunately I was in the ER and there were doctors present when seizures occurred. I have two different types and will be on meds for the rest of my life. Epilepsy becomes more common with age. I've had no more attacks, but broke a wrist during one of the early ones.
I have been told about white lesions on MRI scans, but it has been a long time since I brought it up with my neurologist. I have a great relationship with mine....and I generally have MRI's every 18 mos. or so. I, too, have been told that the white lesions are nothing to worry about, haven't changed in many years and so I just live with them. It would be nice to know the reason why, but then what am I going to do with the info.?
The day will come when we know. As we get older, the brain shrinks. The very worst memory problems I've had have been as a direct result of the autoimmune encephalitis. No, they don't know much about that at this time, either. There are a few reasons, but none scientifically proven. It did, however, affect my memory and a psychiatrist is used here in the U.S. to determine exactly which part of the brain is most affected. I was lucky in that I didn't have a major problem, but I know myself that my memory isn't nearly as sharp as it used to be. To me, that's the most worrisome outcome of all of this.
There have been so many unknowns over the years (I'm in my mid-70's) that one actually learns to live with them, trust in your doctor(s) and just get along with life as well as we can. I have nothing to add to anyone else's experience.....reasons take time and plenty of research. In the meantime, we wait. Yours, Lenora.